Ice Bucket Challenge week destined for state law

Friday

Jul 28, 2017 at 1:08 PMJul 28, 2017 at 1:17 PM

By Andy Metzger/STATE HOUSE NEWS SERVICE

Lawmakers want to drench the first week of August in cold water, sending Gov. Charlie Baker legislation on Thursday to annually commemorate the catchy and frigid fundraising activity known as the Ice Bucket Challenge.

Started by Bay Stater Pete Frates in 2014, the Ice Bucket Challenge raises money for research into Amyotrophic Lateral Sclerosis (ALS), described by the Centers for Disease Control and Prevention as a "progressive disease that attacks the nerve cells that control voluntary movement."

A former Boston College baseball team captain who grew up in Beverly, Frates was diagnosed with ALS in 2012.

The rolling fundraiser involves one person challenging another to donate to ALS research and also to have a bucket of icy water dumped on his or her head. The person challenged then becomes the challenger for someone else, as the ice buckets keep spilling and the fundraising dollars pour in.

According to John Frates, Pete's father, the campaign raised more than $250 million through 2014. He said the family is "blessed" by all the tributes to Pete while still "dealing with the harsh reality of the disease."

The family has reportedly struggled to keep up with the cost of care and is accepting donations at PeteFrates.com.

One of the few questions concerning the bill's future is whether the governor will incorporate a bucket brimming with icy water into a signing ceremony for the legislation. Baker is an avowed supporter of the ice bucket challenge, leading a group of officials on the State House steps in 2015 to douse themselves in cold water in the name of the charity.

"Pete Frates is an incredible story of turning a horrible tragedy into a monstrous success," Baker said Thursday. He said, "There is literally tremendous progress being made clinically through research that in many ways can be directly attributed to the money that he raised and the attention he brought to this issue."

The bill (H 1697) filed by Beverly Rep. Jerald Parisella and Salem Sen. Joan Lovely, directs the governor to annually proclaim the first week of August as Ice Bucket Challenge Week "to honor the contributions of Pete Frates and all those that participate in raising funds and awareness to battle the disease Amyotrophic Lateral Sclerosis, also known as Lou Gehrig's Disease, and recommending that said week be observed by the people in an appropriate manner."

Lovely said it is estimated that 20,000 Americans are living with ALS and there is no cure.